Neurofibromatosis Patients United (NFPU) serves as the preeminent umbrella association for patient organizations that work for neurofibromatosis patients within the European region. Neurofibromatosis patients throughout Europe confront remarkably uniform challenges, including constrained access to adequate medical and psychosocial care, limited information resources, restricted availability of clinical trials…
NPU
NF Patients United - Global Network of Neurofibromatosis Patient Organisations
NGO · Austria · EU Transparency Register 370223242487-93
2
positions filed
in the 583 files tracked
1
legislative file
of 583 tracked
2
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 583 consultation files tracked so far (42,224 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 964 non-governmental organisations on this site, they rank #598 by legislative files engaged — a count of participation, not a measure of influence.
1.8
declared lobbying FTE
self-declared
—
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2021
in the register since
Declares membership of
- EURORDIS - http://eurordis.org
- European NF group - https://enfg.eu/
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026).
- Register category
- Non-governmental organisations
- Head office
- Warnsveld, Netherlands
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
NF Patients United - Global Network of Neurofibromatosis Patient Organisations filed 2 positions on 8 Nov 2023, across 1 of the 583 legislative files tracked here, attaching a full position paper 2 times.
What they argued
Neurofibromatosis Patients United (NFPU) serves as the preeminent umbrella association for patient organizations that work for neurofibromatosis patients within the European region. Neurofibromatosis patients throughout Europe confront remarkably uniform challenges, including constrained access to adequate medical and psychosocial care, limited information resources, restricted availability of clinical trials…
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Everything on this page comes from NF Patients United - Global Network of Neurofibromatosis Patient Organisations’s own submissions to the European Commission — we have added nothing and interpreted nothing. If something is wrong or out of date, email info@policyspeak.com and we will correct it. If you are an individual named in a record, our privacy policy sets out your rights to correction, objection and removal.
Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.